Wednesday, January 30, 2013

It was written in the spirit of just about everything I write: to share the nitty-gritty complexities of what I find myself navigating in geriatrics, to bring attention to medical issues that older adults and PCPs struggle with, and to try to bridge the rhetoric-reality gap.

Some seem to have appreciated the post, and the authors of the 2012 study of OpenNotes were kind enough to write a follow-up post on THCB, engaging with the issues I raised. However, it also seems that many perceived my post as casting doubt on the value of OpenNotes, or otherwise unsupportive of the effort to implement OpenNotes as widely as possible.

Whoah Nellie.

So I've decided to set the record straight re my position on OpenNotes:

My position on OpenNotes: we should all be doing it

I support the fundamental tenets of OpenNotes and hope that all patients will have access to their notes within the next few years.

To me the great overall value -- both ethically and in terms of better health outcomes -- of OpenNotes is a no-brainer.

Which is why I didn't write about whether or not OpenNotes should become the standard of care. Of course it should be. It is, after all, the patient's information and their health which is at stake, and it's rather scandalous that for so long it's been so difficult for patients to access their own medical information.

Furthermore, our historic lack of transparency has often been harmful to patients and families, who far too often are not informed of the diagnoses in their charts. I actually come across this often in practice, both since I see new patients, and because I'm a bit compulsive about reviewing all the problems with patients.

Because of this lack of information, I've come across families who haven't planned for continued cognitive decline (or helped their loved one avoid the psychoactives on the Beer's list), patients who exacerbate their kidney disease by taking over-the-counter NSAIDs, questionably depressed individuals who never understood why they were given an SSRI and never made sure someone adjusted their dose, and anemic patients who tell me their anemia is new when further chart review reveals that they've had chronic anemia for years.

I once had a smart engaged older ex-journalist do a double-take when I mentioned his chronic renal insufficiency. He had a creatinine of 2, which I also found in his hospital records from two years prior. He didn't recall anyone ever mentioning it to him. And there I was, not anticipating that I'd have to devote half the visit to education about chronic kidney disease (we did after all have several other complaints and issues on the agenda already).

In short, the current state of affairs, in which patients lack easy access to their clinical notes, is a huge problem, since it seriously cripples (sometimes fatally) patients' abilities to participate in their care and otherwise ensure that their medical care is person-centered and a good fit for their values.

So I say open up the notes! (And the labs. We *really* need OpenLabs.)

Beyond deciding to go OpenNotes: supporting clinicians and patients

Really, the discussion shouldn't be about whether to open up access to clinical notes. The discussion should be about how to hammer out the details (without spending years dithering or rigorously planning for every eventuality), and how it's going as we do it. We need constructive conversations about how to make this implementation as successful as possible for patients and for clinicians. My own priorities for opening up clinical notes are that we foster an effective collaboration between patients and clinicians, support patients in being informed about and engaged with their medical care, and ensure that working in an OpenNotes environment feels sustainable to clinicians and doesn't result in them shirking the documentation of awkward topics.

I emphasize that last point, because I know that primary care in its current form feels unsustainable to many clinicians. (Hence the high burnout rates currently documented in front-line clinicians.) We are asking primary care clinicians to step up, and they should. And they will need support and attention in order to do so successfully.

For example, as is, I already spend too much time charting. Too much, as in way more time than I was given to do it in my previous salaried positions, which is part of why I chronically ran behind and found myself burnt out. Even now, I spend way more time charting than I get paid to do. (Yes, I currently charge by time, and no, I still don't quite have the nerve to charge people for exactly all the time I spend on their chart.)

I do it because I'm detail-oriented, and because I need my notes to be useful to other clinicians. (I've never charted under the assumption that no one other than myself -- or a Medicare auditor -- was going to seriously take a look, but I can tell you that is not true of many PCPs in community practice.) I also often copy my assessment and plan into the patient recommendations section of my EMR -- which means it's viewable to the patient's representative -- and I've been providing patients with detailed written recommendations for the past few years.

For me, I've found that is IS extra work, to explain my thinking and suggestions in writing to a lay person. It's good work, and important work, but it takes time, even when I'm not trying to figure out how to address a particularly delicate topic such as alcohol use.

Now, I care for people who are both medically complex and tend to have a lot of "life" complexities (family issues, home safety issues, dealing with overall decline issues, is this person cognitively capable of making medical decisions issues, coordination between multiple specialists and systems issues, etc).

These patients may not be the ones that most doctors write notes about, but that's who needs the most medical care, and this population of aging complex patients is growing.

So as we implement OpenNotes, I hope we will collectively commit to regularly checking in with clinicians and with patients, to find out how it's going for them, and to adjust things as needed to support everyone in doing the work that must be done.

I also hope that those institutions that implement OpenNotes will be willing to share the lessons they learn, as they help their clinicians adapt to a much-needed era of transparency and person-centered medical care.

Summing it up

I'm for wide-spread adoption of OpenNotes. Far too many patients are being currently harmed by inadequate access to and understanding of their medical issues.

I do think many clinicians will need support and assistance in order find the transition to transparency sustainable. I think this will be more of an issue in cases where the patients are medically complex, or when sensitive topics are at issue. We can and should ask clinicians to step up and embrace collaboration, transparency, and person-centered care. And we should plan to support them in this effort.

Monday, January 28, 2013

These days, I look at a lot of websites describing some kind of product or solution related to the healthcare of older adults. Sometimes it's because I have a clinical problem I'm trying to solve. (Can any of these sleep gadgets provide data -- sleep latency, nighttime awakenings, total sleep time -- on my elderly patient's sleep complaints?)

In other cases, it's because a family caregiver asks me if they should purchase some gizmo or sensor system they heard about. ("Do you think this will help keep my mom safe at home?")

And increasingly, it's because an entrepreneur asks me to check out his or her product.

So far, it's been a bit of a bear to try to check out products. Part of it is that there are often too many choices, and there's not yet a lot of help sifting through them. (And research has shown that choices create anxiety, decision-fatigue, and dissatisfaction with one's ultimate pick.)

But even when I'm just considering a single product and trying to decide what to think of it, I find myself a bit stumped by most websites. And let's face it, if I visit a website and it doesn't speak to my needs and concerns fairly quickly, I'm going to bail. (Only in exceptional cases will I call or email for more information.)

So I thought it might be interesting to try to articulate what would help me more thoughtfully consider a product or service that is related to the healthcare of older adults.

My questions when considering a new technology

To begin with, here are the questions that I think about when considering a new technology:

Does it help me do something I'm already trying to do for clinical reasons? Examples include tracking the kind of practical data I describe here (sleep, pain, falls, etc), helping patient keep track of -- and take -- medications, helping caregivers monitor symptoms, coordinating with other providers...my list goes on and on, although I'll admit that I prioritize management of medical conditions, with issues like social optimization being secondary. (Social optimization is crucial, it's just not what physicians are best at, although I certainly weigh in on how an elder's dementia or arthritis might affect their social options.)

What evidence is there that using it will improve the health and wellbeing of an older adult (or of a caregiver)? Granted, the vast majority of interesting new tech tools will not have been rigorously tested in of themselves. Still, there is often related and relevant published evidence that can be considered. For instance, studies have generally found that there's no clear clinical benefit in having non-insulin dependent Type 2 diabetics regularly self-monitor blood glucose. (And it is certainly burdensome for older people with lots of medical problems.) Hence I would be a bit skeptical of a new technology whose purpose is to make it easier for older adults to track their blood sugar daily, unless it were targeted towards elders on insulin or otherwise at high risk for hypoglycemia.

How does the data gathering compare to the gold standard? Many new tech tools gather data about a person. If we are to use this information for clinical purposes, then we clinicians need to know how this data gathering compares to the gold standard, or at least to a commonly used standard. For instance, if it's a consumer wrist device to measure sleep, how does it compare in accuracy to observation in a sleep lab? Or to the actigraphy used in peer-reviewed sleep research? If it's a sensor system to monitor gait, how does it compare to the gait evaluation of a physical therapist? If it's the Scanadu Scout Tricorder, which measures pulse transit time as a proxy for systolic blood pressure, where is data validating that pulse transit time as measured by this device accurately reflects blood pressure? (BTW I can't take such a tricorder seriously if it doesn't provide a blood pressure estimate that I can have confidence in; blood pressure is essential in internal medicine.)

How exactly does it work? Especially when it comes to claims that the product will help with clinical care, or with healthcare, I want to know exactly how that might work. In particular, I want to know how the service loops in the clinician, or will facilitate the work the clinician and patient are collaborating on.

How easy is it to use? Tools and technologies need to be easy to use. Users of interest to me include older adults, caregivers, and the clinician that they'll be interfacing with. BTW, all those med management apps that require users to laboriously enter in long drug names are NOT easy to use in my book.

How easy is it to try? Let's assume a new technology is proposing a service to the patient (or to me) that offers plausible benefits, either because it's a tech delivery of a clinically validated service, or because it passes my own internal common sense filters. How easy is it to actually set up and try? I'm certainly more inclined to explore a tool that doesn't require a large financial investment, or training investment.

How cost-effective is using this technology? I'm interested both in cost-effectiveness for the patient & family, and also for the healthcare system. Sometimes we have simpler and cheaper ways to get the job done almost as well.

Can this technology provide multiple services to the patient? My patients are all medically complex, and have lots going on. Products that can provide multiple services (such as socializing with family off-site AND monitoring symptoms), or that can coordinate with another product -- perhaps by allowing other services to import/export data -- are a big plus.

Does this technology work well for someone who has lots of medical complexity? As I mentioned in my comments on the Health Design Challenge, I always want to know if the product is robust enough to be usable by someone who has a dozen chronic conditions and at least 15 medications.

What I'd like to see on the websites

These days, a website is the generally the place to start when looking into a product or service.

It's a great help to me when a product's website addresses the questions I list above. Specifically, I find it very helpful when websites:

Have a section formatted for clinicians in particular. I'm afraid I don't have much time for gauzy promises of fostering a happier old age. I just want to know how this will help me help my patients. Specific examples are very very helpful.

Have a "how it works" section with screenshots and concise text. Personally, I have limited tolerance for video (videos can't be skimmed the way text and pictures can) and find it a little frustrating when most information is in videos. Note that it's probably best to have separate "how it works" sections for clinicians and for patients/caregivers.

Provide a downloadable brochure for patients/families, and another for clinicians. Although it's annoying when information is presented ONLY in a pdf brochure, I've discovered that I quite like having the option of a brochure. Brochures are much easier to read than websites, in that you don't have mentally decide how to navigate them, or search through them in quite the way you do with websites. Also, brochures can be conveniently emailed to colleagues or patients, which is nice when you want to suggest that your patient try something new.

Include information regarding the relevant evidence-base supporting use of the product. It's nice to not have to go digging through the literature myself, to see if this is likely to help my patients.

Include information on how valid/accurate the data collection is compared to conventional clinical practice. And make it easy to find. I just tried looking for such information at www.myzeo.com and it took way too long to find, in part because they don't seem to have a section meant to help a clinician who is asked "Can I use this device, doc?"

Offer a free 30 day trial. Especially when people have a lot of choices, or have other psychological hurdles to clear (like figuring out exactly how will this work), it's nice to get the option to try something for free at the beginning.

Summarize how the product is different or better than similar available products. Often
there are several companies offering a product for a given need
(caregiver coordination, med management, etc). It's nice to be able to
quickly figure out what is unique or better about a particular product.

Summing it up

I've found it fairly tiring to look into new technologies, because it usually requires a lot of effort to figure out whether this technology is likely to help my older patients, and how exactly it might work to try the technology.

In general, if companies want clinicians to easily engage with their product, they may want to consider creating a section of their website, designed specifically to answer the concerns of clinicians.

So now I'm wondering if the Blue Button Redesign will be incorporating progress notes too. I certainly hope someone creates a user interface in which patients can keep their progress notes and then show them to other clinicians (like me!), and maybe annotate them with their questions.

Then today I discovered this fascinating Blue Button Implementation Guide, which lists the sections that should be included when a patient health record is generated ("if they exist in the dataholder's system").

Hold on to your hats, geriatricians.

"Functional and Cognitive Status" is on the list!

Am I the only geriatrician who didn't know this? Doesn't matter. I did a little dance of joy when I read this, then I fell to my knees and bellowed "praise the innovators!"

Then I thought wait a minute. Which EMRs are capturing functional and cognitive status in their structured data fields? And who is entering the data, and based on what information?

I'll try to find out more about this in the coming weeks, as it's interesting to think about how to systematically -- and accurately -- capture this very important data.

In the meantime, I would love LOVE to hear from anyone who's working with an EMR that currently captures this data. I imagine PACE programs such as OnLok are doing it, but whom else?

In particular, I've been asked about input on certain designs from "the geriatric perspective."

As I'd like for as many designers and developers as possible to help older adults, I'm going to share my top design consideration here. (As always, others who help older adults are more than welcome to chime in via the comments section.)

For now I'm not even hoping to see designs address "geriatric"
considerations such as documenting cognitive and physical function, screening for falls, or
detailed explanations of the plan for managing multiple chronic
conditions.

Instead, my design interest at this
point is one that is relevant to the work of most internists, ED docs,
and physicians working with hospitalized patients.

My top design consideration: how well does your design handle medical complexity?

So, does your design hold up for a 79 year-old sample patient with a medical history that looks like this:

15 chronic problems

Not uncommon among that subset of VA and Medicare patients who generate the bulk of healthcare costs

18 medications

Note that medications in these patients are constantly being switched, revised, and adjusted.

Designs that help patients and clinicians track those changes over time would be very valuable; I used to scroll back through the VA's prescription records trying to figure out when the dose of a given medication had been changed.

3 hospitalizations in the past 2 years, one of which includes 2 weeks in the ICU

Any general internist or ED doc comes across lots of patients like this.

If you are a PCP you have probably had them show up post-hospitalization for a new patient visit too, because the hospitals will tell them "You need a PCP. Here, we made you an appointment."

24 encounters over past 2 years, including 5 ED visits

Does your design help patients and providers spot the more important encounters, when there are so many?

25 different types of lab results, with 5-30 reported results of type over the past two years

Lipid panels are not checked often. CBCs and metabolic panels are.

A hospitalization of 2 weeks can generate an incredible amount of lab data

Multiple radiology results and diagnostic evaluations

I'm just noticing that radiology results aren't on this list of CCD fields but they are very important (maybe they usually end up under "Procedures"?)

An older adult with multiple chronic conditions and multiple hospitalizations or ED visits will generate a lot of results from radiology and other diagnostic encounters

There are of course lots of features I'd like to see in a good design for older adults, some of which I think may be feasible now using the CCD inputs, others of which will probably require a larger reimagining of the collaborative health record for the medically complex older adult.

I'll address those in another post perhaps.

Shouldn't all health solutions be designed for medically complex patients?

I'm not a designer or an engineer, but isn't there some kind of principle that states that the best designs are the ones which are engineered to tolerate the maximum expected use, and then some?

If we were to apply this idea to healthcare innovations, then it seems that they should be designed to perform well when used by the kind of medically complex older adult who:

Desperately needs help keeping track of all the medical mayhem,

Is seeing multiple clinicians, who also desperately need help figuring out what's been going on, and

Is costing the system a lot of money.

If you can find a way to present a complicated medical history in a way that is visually elegant, intuitively organized, and usable for patients and families, then presenting the info of 52 year old Ellen Ross with her two item problem list and four encounters will be a piece of cake.

And don't forget to consider making a clinician version of the printed info as well.

Summing it up

A redesign of the downloadable patient record should be robust enough to handle the complexity of an older adult who has multiple chronic problems, medications, encounters, and has also been hospitalized several times in the past few years.

These are the patients who need the most help keeping track of their medical information, and who have the most to gain from being able to share their downloaded information with other providers.

Hopefully the winners of the Health Design Challenge will be put through their paces before the project organizers move on to building their "combination of winning designs."

Thursday, January 17, 2013

Since my clinical work requires me to spend a fair amount of time figuring out an older person's medical history and current plan of medical care -- my spouse recently dubbed me a "meta-doctor" for the elderly -- I've been very interested in the Blue Button redesign challenge. This design competition took place late last fall, and winners were recently announced.

There certainly are some thought-provoking ideas to admire, and unsurprisingly for a competition judged in large part by designers (as opposed to by the users i.e. patients, caregivers, and practicing clinicians), the winning entries are aesthetically attractive.

But will these turn into usable personal health information products that can help patients and providers? Unclear. I think it will depend on whether the project organizers will be defining exactly what kind of product they are trying to create, and on how the next steps of the project are implemented. (They are apparently planning to use an open-source process to build a product inspired by these designs.)

Now, let me start by saying that the overarching goal of the project is wonderful and very important. Basically, this design project seems to have started as an effort to help the VA and others produce a more appealing and usable personal health record, also known as the Blue Button output. (You can see what the output currently looks like here.) Obviously the Blue Button was a good idea in sore need of an upgrade; the VA and others deserve kudos for participating in this redesign effort.

Where I start to get confused, however, is in understanding exactly what the goal of the design project currently is. I've only looked at a few projects in detail, but few of them seem content to just present the Blue Button output in a more congenial and modern way.

Instead, many entries propose nothing less than a full-scale reimagining of how a person might dynamically interact with their medical information (and presumably with their clinicians, although so far I've come across very little in the galleries that specifies how these designs will help me help patients). So we have entries that propose things like the calculation of a global health score ("derived from key body, emotional and lifestyle factors") and condition views which gather up all visits, medications, and results related to a condition (this idea I really like, but we aren't yet tagging data in this way in the EMRs, which would seem to be a prerequisite).

All this thinking outside the box is laudable. Believe me, I like it, and would like nothing better than to tear apart the way we currently organize health information and (barely) share it with patients, and then rebuild it from scratch.

However, in terms of developing a feasible and usable solution to a practical problem, this feels like pretty significant mission creep. It's true that a downloadable patient health record offers exciting possibilities for engaging patients in the management of their health. But developing that kind of sophisticated personal health record is a big big project. Furthermore, I thought the job at hand was to take the existing output from the VA and other big health providers, and make it more attractive and usable for patients and clinicians. Let's not forget, after all, that the VA's original intent for the Blue Button was to give veterans a way to share their essential VA medical information with non-VA providers. This is a crucial problem to solve, while we wait for health information exchange to finally become widely available and operable.

To be fair to those 230 individuals and companies who submitted entries, the design objectives as specified by the Challenge organizers left a lot of room for interpretation:

Improve the visual layout and style of the information from the medical record

Create a human-centered design that makes it easier for patient to manage their health

Enable health professionals to more effectively understand and use patients' health information

Caregiver Usefulness: Does it ease the responsibilities of a caregiver?

Physician Usefulness: Can a physician integrate it into their workflow?

Visual Hierarchy: Can the most important information be easily found?

Information Density: Is it easy to digest the information that is presented?

Accessibility: Can a varied population make use of this document?

Again, lots of room for interpretation here. I also found myself wondering how the designers were supposed to know the answers to these questions. How much do they know about the needs of patients, or the responsibilities of caregivers? (Come to think of it, did the judging panel include adequate representation from patients and caregivers with at least moderate health care needs?) Who decides what the most important information is? For instance, I doubt that either patients or clinicians really need to see immunizations early on, and it is genuinely weird to see a past pregnancy listed above diabetes on a problem list.

And which physician said that their primary need is for a patient information document to integrate into the workflow? I would've said first that I need it to quickly summarize the patient's past medical history, and current plan of medical care, so that I can figure out how to help the patient. (This is something that a good old-fashioned dictated hospital discharge summary does well, and that a computer generated continuity of care document does poorly.)

Were these designers were able to interview users before designing? As far as I can tell this challenge was announced in early November and entries were due by December 1st, so it seems that the design teams couldn't have had much time to study users in real life. And if they did study users, did they study older people with multiple medical problems? The test of good design will be whether it stands up to these kinds of "heavy users."

Now about the winners. Trying to make sense of them is overwhelming. (I'm still scratching my head wondering how the judges worked their way through 230 entries in four weeks.) There are three ranked winners for each of the following categories:

Best overall design

Best medication design

Best problem/medical history

Best lab summaries

(Plus another 22 entries that "inspired the judges")

I quickly realized that looking over more than 1-2 of these in any depth was out of the question (I do have a day job after all), but I'll share a few thoughts.

First of all, many of the entries are based on Ellen Ross, an Asian American woman born in 1960 who takes Tylenol #3 and Indomethacin, and has two items on her problem list. I was a little perplexed by this, until I realized that this was the data provided in the sample Blue Button output.

Bummer. These designs would undoubtedly be much more robust if the organizers had offered the example of a more typical medically intensive VA patient, with ten chronic problems, twelve medications, and twenty encounters over the past two years.

(Note: the winning entry for best overall design moved Ellen's DOB back to 1940
- yay- and put her Lipitor, Klonopin, meclizine, and naproxyn - argh. Something patients really need is to know when they've been prescribed meds on the
Beer's list!)

In fact, evaluating the entries would've been much easier if the organizers had specified a standard complex patient to be used as a model, and had also requested some standard deliverables from the designers. It would've been nice to see each designer's prototype for the printout and digital version of their proposed patient information record.

And what about a printout that could be given to clinicians? To my surprise, I didn't come across any entries that provided a clinician version of the printed information. This struck me as odd, since I envision patients bringing their printout when they have to go to the emergency room, or if they go see another doctor. Surely the generation of a more compact clinician-oriented print-out of the patient's information would be made possible by software. (More importantly, information presented in an unfamiliar and lengthy format is more likely to get ignored by busy docs, so I think there's real value in designing an output version meant to be read by clinicians.)

Next steps and suggestions

According to this website maintained by the challenge organizers, in the next 2 months, a combination of the winning designs will be built via an open-source process. This strikes me as a pretty ambitious timeline but I look forward to seeing the product.

What exactly will they be building? Specifically, are they indeed going to go for the grand reimagining of the patient health record? (Or better yet, collaborative health record, which is a term I recently came across on Twitter.) Or will they instead focus on a nicer looking output for the VA? Would be nice for them to spell this out more, as inquiring minds want to know.

And will they do any user-testing to refine these designs, before starting to build? They have generated lots of promising ideas, but it would be nice to see the winners confirm that their prototypes are more suited to complex patients, before starting to build based on those designs. For instance, they could ask the winning designers to resubmit the prototypes based on a standardized patient with multiple chronic diseases (like the one I wrote about here). I also hope they'll run their best designs past a focus group of older patients and caregivers, as well as past practicing practicing clinicians who routinely review comprehensive medical histories for patients who are new to them (i.e. ED docs and PCPs).

Summing it up

This Health Design challenge has spurred designers to come up with fresh ideas for a patient health record, including some reimaginings of how patients might interact with their data. I applaud the spirit of this design competition, but am wondering whether this will in fact lead to a workable solution to an important problem: turning the VA's Blue Button output into something more readable and useful for patients and clinicians.

These designs would feel more convincing if we could see them applied to much more complicated patient histories. It's too bad that the challenge organizers didn't provide one complex standard patient for all designers to solve for. It's also not clear to me that the designers were able to get a lot of input from patients (especially older complex ones, i.e. the ones who use the most healthcare), caregivers, and clinicians, and it would be nice for the top designs to be focus-grouped before the project organizers move on to building a product. Last but not least, I'd like to see these designs produce a separate
printout organized for the needs of clinicians, and hope this capacity
will be part of the finished product.

Tuesday, January 15, 2013

This post is a continuation of the previous post, and briefly describes five more problems that I often come across in my older patients, regardless of education and socioeconomic status. I have some preliminary ideas on how tech tools could help, and of course am open to any and all feasible solutions.

(Disclaimer repeated: These are big complicated problems. I briefly sketch out a few reasons why they happen, but there is of course more to them than I can describe here.)

More real problems of real elders (whether wealthy or not)

Because it's easier to for busy clinicians to prescribe a pill than
to negotiate and arrange for non-pharmacological management, even though
a non-drug approach is often safer and preferred by patients.

Because clinicians may not be aware that there are non-pharm
alternatives that have been proven to be effective. Examples include
physical therapy for gait problems and pain, psychotherapy for
depression and insomnia, bladder training or timed toileting for
incontinence, and REACH to help caregivers manage dementia.

What could help:

I'd love to see an app for older adults that lists several common
diagnoses that can benefit from non-drug management. This could be done
in an evidence-based way. Ideally it would somehow make it very easy for
the provider to prescribe/refer, too.

Patients and caregivers need help speaking up and asking for alternatives.

Procedures and diagnostic evaluations of unclear clinical benefit

Why it happens:

Providers are used to ordering lots of procedures and diagnostic evals - reflexes and habits die hard

Patients often request them (in part because they overestimate the likelihood of benefit)

Providers may not actually have time to think or look up likely benefits

Explaining the likely benefit to patients is time-consuming, especially when they have their hearts set on some test

What could help:

For clinicians: tools that make it very easy to access statistics related to the likelihood of benefit.

I myself really like knowing the Number Needed to Treat (and Number Needed to Harm). Clinicians also should be able provide at least approximate "base rate" data to patients, i.e. if a cardiac cath is under consideration in order reducing heart attack risk, clinicians should not only say approximately how many people have to be cathed to avert an important outcome, but they should also be able to say roughly how many individuals are expected to have the heart attack or other outcome over the next 5-10 years.

As a clinician I can usually find some of these numbers by checking UpToDate or searching the literature, but it's way too labor and time-intensive to do routinely.

Note that decision aids help with some of this, but I find it's often not so easy to find a suitable decision aid right as I'm clinically working.

For patients and families: there should be patient-oriented versions of the data above.

Patients should also be coached on how to ask about expected benefit and base rates every time a significant procedure or test is recommended. Ex: "How are you expecting that I'll benefit from this procedure, and what is the likelihood that I'll actually benefit?"

In truth we need a national push to improve health literacy when it comes to numbers and statistics, and then we need point-of-care tools that make the data easily available AND provide tips on how to convey it/digest it.

Decision-aids are helpful but it needs to be easier for clinicians to find a good aid for the topic at hand, right when they need it.

I love the way Amazon shows me what's been popular, and what other shoppers like me have looked like. Would be great to see similar features in an online decision-aid repository:

easy to search based on features/filters (like age & general health condition of patient)

clinicians being shown items used by similar clinicians, i.e. it should know I'm a geriatrician and should show me items downloaded or flagged by other geriatricians

Lack of clarification of values, goals, and care preferences

Why it happens:

Most providers haven't had enough training or practice discussing values/goals/care preferences with patients and families

Providers also tend to be very rushed and they focus on what is urgent and easier to take care of

Patients and families often don't realize the importance of articulating values and goals, and may not realize that their healthcare could be provided differently. (There is quite a lot of research demonstrating that patients often -- but not always -- prefer less aggressive medical care, when offered enough information and a choice.)

Patients and families need support in asking clinicians to accommodate their preferences.

What could help:

We should certainly keep trying to educate providers, but my guess is that we'll get faster results if patients and caregivers start using advance care planning tools like PREPARE, created by my UCSF colleague Dr. Rebecca Sudore.

I'd love to see tools that coach patients and families on how to constructively insist that clinicians discuss values and goals. Has anyone come across some?

It's often hard for providers to remember to follow-up on a symptom, especially in older complex patients who have multiple items which could be addressed in the visit

Providers may not be very comfortable addressing certain types of symptoms, especially those for chronic conditions that aren't curable or don't respond easily to a prescription (everyone prefers to work on something that feels very doable)

Patients and families often are not told how to track a symptom and the response to a proposed management plan, or they lack the tools to make this easily doable

What could help:

Clinicians need EMRs that keep track of unresolved symptoms, and keep prompting the care team to follow-up and address. Likewise, patients and families should be able to access something similar. That way in preparation for the next visit, clinicians would be reminded that here is a symptom that needs follow-up, and patients should be prepared to close the loop or follow-up on an unresolved problem brought up at a previous encounter.

We need to operationalize a Getting-Things-Done approach, which systematizes the capture of what needs to be done, and helps everyone identify the next step needed to move forward on a project.

We really need apps that work well as symptom trackers! Trying to dig data out of the patient's memory is slow and error-prone.

Those that are combined with sensors that collect data passively sound promising. For example, for elderly diabetics who may be symptomatic from hypoglycemia (a clinician should wonder whether an elderly person's woozy spells are low blood sugar versus some other cause), one could use one of those blood sugar sensing patches, along with some kind of app that would prompt the patient or caregiver to report dizzy spells or other events.

An app I really want: a symptom tracking app that allows the clinician to easily program in what symptom should be recorded. Let's face it, it would be a pain to look for one app to track urinary symptoms, another app to track difficulty eating meals, another app to track episodes of confusion, and then another to track pain. The other day I tried to find an app to log episodes of fatigue and low energy in a friend, and I gave up after 15 min. Too many dang choices, none of which seemed suitable.

Better: an app in which it's easy to program what you want to track, and how often the app should ping the patient/caregiver to log. Bonus if you can import in from a library of symptom templates (Pain: location, intensity, what you were doing, what you did for relief, how it worked, etc. Confusion in elders: situation, precipitating factors, how long it lasted, time of day, etc)

Re helping clinicians find suitable apps, Happtique is kind of a step in the right direction but not yet usable enough for my purposes, and couldn't point me towards the fatigue tracking app I desire. (Also nutty that all these app developers expect clinicians to pay for their app before trying it. You'd think they'd offer every clinician at least 30 days free.) Just as we need a better user-interface to search for suitable decision aids (see above), we need it to sort through apps. Maybe Amazon should start an app store?

Frustration and confusion with the healthcare system

Why it happens:

Too many reasons to list here! The system is poorly organized, poorly coordinated, and we do a terrible job of involving patients in their own care, and of helping patients understand what our plan is for them.

What could help:

I like the idea of a collaborative health record, in which both patient and care team can follow a common problem list. Just like Basecamp helps people collaborate on a joint project, EMRs should offer similar project management capabilities.

In general, we need sooo many improvements...progress is being made within healthcare, but if a critical mass of patients and families can mobilize and insist on participating in their healthcare, I think the needed changes will come sooner.

So far the more prominent e-patients ("equipped, enabled, empowered, engaged") I've read about seem to be younger than my patients. Is there a movement for older e-patients with multimorbidity, or for their e-caregivers?

I wish he and I could switch places for a few weeks. You want problems? I've got problems, going up the wazoo (not my own, fortunately) and out the ears (which I do look in; lots of older people hear better once that wax is removed).

For instance, in my last post I mentioned some very common problems that I've discovered among most of my patients, even among my wealthy white educated Medicare patients.

In this post I'll clarify these problems a little bit more, and share some thoughts on some approaches that I can envision helping solve each problem. (Hint: I can see a future for tech solutions here.)

Disclaimer: These are big complicated problems. I briefly list a few reasons why they happen, but this obviously can't be comprehensive. (There's a reason why expert workgroups produce such long reports.)

Real problems of real elders (whether wealthy or not)

Prescription of medications that cause confusion and worsened balance in seniors (and may increase the risk of developing dementia: see here and here).

Why it happens:

Many common prescribed (and OTC) medications are "psychoactive". These are the ones that usually come with warnings to not drive or operate machinery.

Most doctors know, when asked, which medications have these side-effects, but they underestimate how likely it is that an older patient will be affected.

What could help:

An app or other service that helps patients and caregivers quickly figure out whether a prescribed medication is on the Beers Criteria. This is a list of 34 medications and types of medications that are “potentially inappropriate” for older people, and was last updated in 2012.

The app should provide guidance on how to constructively engage providers when an potentially inappropriate medication is prescribed. The American Geriatrics Society offers suggestions here.

Most important is that the app make it super easy for patients to enter the medication name into the app. Has anyone yet developed a way that patients can take a picture of the prescription bottle, or barcode, or QRS code? (I'm so tired of medication apps that require people to laboriously type in medication names -- huge usability killer.)

Dementia that goes undiagnosed for far too long; once diagnosed, inadequate education and support for family caregivers

Why it happens:

PCPs are too busy; they have too much to do, and far too little time.

Many PCPs are uncomfortable doing cognitive screening, both because they haven't done it often and because they aren't sure exactly what to do with the results (nobody likes to open a can of worms).

What could help getting diagnosis started:

Cognitive screening is now supposed to be part of Medicare's annual wellness visit. A suitable app could help patients and caregivers be proactive in gathering practical information prior to the visit. This should include a questionnaire on ability to manage IADLs independently; problems with IADLs are a good sign that further cognitive evaluation is needed. One could also include a short questionnaire based on something like the Alzheimer's Association's 10 signs.

I currently find no app available to help patients and families prepare to bring up a concern of cognitive impairment to a clinician. Does anyone know of one?

Lack of care coordination among multiple specialists and care sites

Why it happens:

Many reasons, including siloed information, not-yet-widely-compatible HIT systems, clinicians unused to having to coordinate with others and share information.

Those patients and families who are willing to keep their information and move it with them have found it hard to obtain and organize their information. (I'm eager to see if the new Blue Button output will help.)

What could help:

This problem's too big to address in this post. Eventually we'll have better personal health records and health information exchange.

Many reasons; generally clinicians are lacking the time, comfort, and sometimes experience in addressing the "big-picture" with patients and families, especially if that big picture isn't looking so rosy.

What could help:

Clinicians need a lot of training and support in order to do their part. Apps and programs are sorely needed to help calculate life expectancy, likelihood of dying in next few years, etc. Right now it takes a lot of work to get the right data right now; imagine if clinicians could instead ask Siri (or IBM's Watson). Then they could focus on the task of sharing the info with the patient (this is hard, and before especially tough talks I still review something like the Fast Facts for Palliative Care, or Uptodate).

While we wait for millions of clinicians to get more training: it would help if patients and families could be coached in how to ask their providers to address big-picture issues, by regularly saying things like "How do you expect my overall health and function to evolve over the next five years?” Or “How important is managing this condition, in the overall context of my loved one’s health?” (This is when we can opt to not do routine cardiac testing in the dementia patient who is peeing blood and losing weight -- true story from several years ago! We really need to help both clinicians and families see the forest before addressing the trees.)

Coaching and patient education interventions have been developed and tested; the issue is making them more widely available and usable for patients and families.

Ok, I will list ideas for addressing the second half of my list in my next post.

In the meantime, if any clinicians or others have ideas on how to address the above problems, please comment or email me.

In a nutshell

Even wealthy educated older adults repeatedly suffer from certain pervasive problems in outpatient healthcare. These include the prescribing of risky medications, late diagnosis of cognitive impairment, lack of care coordination, and inadequate understanding of overall health status and prognosis.

In this post, I briefly summarize some key causes for these problems and some ideas for addressing them.

I'd love to be pointed towards any practical tools or technologies that can help clinicians, patients, and families address these issues.

Monday, January 7, 2013

This is a concern I've heard more than once from my colleagues in academia. (If you're not an academic and aren't sure what health disparities are, here's a handy summary from healthypeople.gov. Note that healthypeople.gov doesn't call out the elderly as prone to suffer disparities, but MedLine does.)

It's an understandable worry. After all, here are some common predictions I hear from the digital health community:

Smartphones, tablets, sensors, and apps will allow people to collect and monitor their own health data

Better access to information will allow people to make better health decisions, and will empower them to direct their own health care

Obviously, if you've spent any time providing clinical care to people who are poor, less educated, or elderly, it can be hard to imagine them donning a sweatband, digitizing themselves, and hustling up the self-empowerment stairs to a wonderful healthy future. (Where the heck are the people who have multi-morbidity or advanced chronic illness in this infographic, anyway?)

If better health will come through smartphones, tablets, and apps, then what happens to the health of those who can't afford to purchase them, or don't find them usable?

If better health comes to those who effectively use the internet and their own personal data to chart a better course for their own health, what happens to those who can't access this information, or can't sort through it effectively?

The median household income in 2011, according to the Census Bureau, was $50,054. IRS data from 2010 shows that to be in the top 50% of income in the U.S., you only need income of at least $34,338. To be in the top 25% corresponds to income of $69,126 or more. To be in the top 10% = $116,623 or more; to be in the top 5% = $161,579 or more. (And in case you are wondering how much income was required to be in the fabled 1% in 2010, it was at least $369,691.)

Also well known in academia: studies consistently show that both lower socioeconomic status and increased age correspond to greater disease burdens and worse health outcomes.

So in summary, we have technological innovations on the horizon, which is predicted to improve the health and wellbeing of those who can afford them and know how to use them -- a group already advantaged by affluence and generally good health.

Will these tech innovations worsen disparities?

Maybe. It would really depend on the circumstances. Specifically, disparities would be increased if:

The tech innovations actually meaningfully improve health outcomes.

The innovations don't become available to people of more modest means, lower health literacy levels, or different cultural backgrounds.

However, if tech innovations improve outcomes AND become available to a broader swath of the population, then disparities could potentially decrease a bit.

This doesn't seem far-fetched to me. There certainly is a digital divide in the country, both along age lines and along socioeconomic lines, but the price of technology is dropping and access is increasing. Health insurers may also be willing to subsidize use of new technologies, if health benefits are clear.

Should improving quality be a higher priority than reducing socioeconomic disparities?

My own answer to this question is definitely yes, especially when it comes to the elderly.

This is because even Medicare beneficiaries who are wealthy, white, and educated often suffer from crummy healthcare.

What do I mean by crummy? Here are some examples of problems I routinely discover in older people of higher socioeconomic status (you've probably come across them when it comes to healthcare for your parents or grandparents):

Prescription of medications that cause confusion and worsened balance

Dementia that goes undiagnosed for far too long; once diagnosed, inadequate education and support for family caregivers

I could go on, but I'll stop there for now and go back to socioeconomic disparities and improving health quality.

We should definitely keep working on reducing health disparities due to socioeconomic status. The rich will always end up better off than the poor, but given the overall wealth of the US, people in this country should have pretty good health care at all levels of economic status.

However, the fact that even wealthy white educated Medicare beneficiaries suffer from poor health care is sobering. If the system can't do right by them, how can it hope to do right by the middle class, and lower middle-class? (The truly disenfranchised, such as those suffering from extreme poverty or severe substance abuse, will likely need special resources tailored to their needs.)

So as part of a multi-pronged strategy to improve the healthcare of older adults, it's valuable to look to the new tech tools and figure out which can help our more advantaged older patients with multiple chronic diseases. Once we've made headway on that challenge, we can work on disseminating effective tech tools to those with less income, or adapting them for people of lower educational levels or different cultural backgrounds.

Even if disparities remain, if every section of society has at least moved upwards in health quality, we'll be better off.

In a nutshell:

Many digital health innovations are most likely to be used by people who are younger, more affluent, and more educated. One can legitimately worry that these innovations will worsen health disparities in the U.S.

However, for innovations to significantly worsen disparities, they would have to both meaningfully improve health outcomes, and not be made available to people of lower economic status. Although the digital divide is real, access to digital tools is increasing for almost all levels of society. Payers may also eventually subsidize tools that have been shown to improve outcomes.

The Medicare population is one in which many suffer from inadequate health care, even when they are wealthy, white, and/or educated. Improving healthcare for older adults requires a multi-pronged strategy, and part of that strategy should be to identify which new digital health tools can improve care in those older adults who are able to access them.

Once suitable tools are developed and identified, additional efforts will be needed to disseminate and adapt them to a broader group of older adults, including those with lower incomes, lower health literacy, and of different cultural backgrounds.

(Disclosure: I have recently opted-out of Medicare -- see last FAQ for why -- and now only treat people who are more "advantaged." I admit that I need to believe that by piloting an alternative model of outpatient geriatric care and trying out new technologies with my patients, I'm still serving the cause of better healthcare for all older Americans.)

Wednesday, January 2, 2013

A little goal-setting can be a good thing. Here are a few for me this year:

1. Have another clinician write a guest post. As fun as it's been to monologue away, I'd like to get a few other people's perspectives on the blog. The goal is, of course, to foster thoughtful discussion on how technology can improve the care of older adults, from the perspective of clinicians with practical experience in providing health services to older adults.

2. Find a decent medication list application that I can recommend to patients and families. My biggest priority is that the app help patients keep track of *everything* that has prescribed by multiple providers, including hospitals and EDs. It also should list over-the-counter meds and supplements. (For more on why keeping track of medications is so important, see this post.)

- The must-have feature: medication entry (name and dosing instructions) that does NOT require laborious typing entry for most medications.

- Also required: app cannot be dependent on a single pharmacy chain or EMR system. Many of my patients change pharmacies or use multiple pharmacies. And most of them see providers in different health systems.

- Bonus points if it allows patients/providers to list the purpose of the medication -- imagine if every patient understood the purpose of every medication prescribed to him or her!

- Additional bonus points if the app keeps a history, including discontinued medications.

Note that I'm not looking for this app to serve the function of daily reminder (in part because so many of my patients use medisets). This is a nice feature, but my greatest need is to quickly see what the patient is supposed to be taking. I also want to know what the patient is actually taking, but for that purpose, I prefer to see the bottles themselves and be able to use a tool to help with medication reconciliation.

3. Shorter blog posts. Time for me to get better about being concise. Well, for January at least.

There is of course much more that I hope to do and learn in 2013 (so many interesting changes and innovations, so little time), but as far as resolutions go, these three will have to do.

In a nutshell:

This year I resolve to score a clinician-written guest post, to find a medication app worthy of recommending to patients, and to write shorter blog posts (for at least a short while).